MY LYME STORY

I have Lyme disease. I was "lucky" in that I actually had a bullseye rash in May 2010 but unlucky because my local family physician's office told me that there was no Lyme disease in Indiana. I never had any of the classic signs of infection such as fever or swollen joints. Instead, I went on a slow but ultimately precipitous decline into late stage dissemminated Lyme. It primarily impacted my nervous system, including my peripheral nerves, motor nerves and even autonomic nervous system. It resulted in diagonses ranging from idiopathic peripheral neuropathy, benign cramp fasciculation syndrome, pelvic floor dysfunction (some days I couldn't sit down - not all days and at seemingly random intervals), panic attacks, brain fog, heart palpitations and other things for which physicians had no name (uterus locked in labor-like cramps for hours at a time). Fortunately, my husband remembered the rash I had (and had made me photograph it), and in May 2012, I found wonderfully devoted physician who only treats tick borne illnesses. At the time of beginning treatment, I was so sick that my parents were planning to move to Indiana to help care for me and our children. While still in treatment, I returned to school to become a licensed massage therapist and have also trained as a MELT Method Instructor. I was in the regular care of my LLMD (Lyme Literate MD) for three years of antibiotic treatment of Lyme disease and Bartonella (which, in my case, seemed to be the primary cause of the brain fog and panic attacks).

I still have Lyme disease but now actively manage it with alternative therapies and self care so that when I feel sick from Lyme it is almost always on my schedule. Since quitting antibiotics, I have found that several "alternative" treatment and self-care techniques help me manage my Lyme disease - I still have it and it flares occasionally, but I now manage it as described below with a daily care regime and alternative therapies every 4-6 weeks. Together, this daily care and alternative therapies are far cheaper than the antibiotics I took and I wish I had known about them while I was still taking antibiotics because I think they would have helped me get off prescription medicines sooner.

Daily SELF CARE

My ideal alternative self care looks like this daily-

1. I use a self care treatment about 10 minutes a day called the MELT Method because MELT

  • increases the amount of fluid we have in our connective tissue and
  • gets the connective tissue fluid moving.

Why is this important? This is particularly important to Lyme patients because the RNA of Lyme likes to hide out in connective tissue and the blasted bacteria is remarkably resilient and can reproduce from RNA alone. I suspect when there is more abundant connective tissue fluid and it is moving better, it is more likely to flush out the RNA so the lymphatic system can try to deal with it. Our connective tissue includes ligaments, tendons and more - it surrounds every joint, muscle, organ and nerve in the body. It is the most abundant and ubiquitous tissue type in our bodies. Increased connective tissue fluid and more movement of that fluid ultimately results in less inflammation. 

I usually MELT a before bed. For me personally, after learning how to MELT, I noticed almost immediate improvement in my energy levels following that first class and increased strength and endurance during exercise. Since regularly caring for my body with MELT, my energy doesn't predictably flag every afternoon requiring a nap. I still have "dip days" around my period when I might try to squeeze in a 15-30 minute snooze but no longer routinely feel the need to sleep 90+ minutes in the afternoon several times a week. I was so impressed with the changes in my body after learning how to MELT that I decided to go for the training to become an instructor. Here's more about Lyme liking to hide out in connective tissue...

http://www.cdc.gov/lyme/pdfs/PersistenceTranscript.pdf

and more about how it impacts the connective tissue...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3751012/

2. Gluten Free Diet. My diet it totally gluten free and almost completely grain free. I also eat very little dairy. Going totally gluten free has seriously reduced inflammation. I never had a problem with it prior to Lyme but since Lyme it causes extraordinarily painful neuropathy for me. It even caused neuropathy when I tried it again for a week while I was still taking antibtioics. My neuropathy was so painful that my shoes hurt, I couldn't tolerate bedsheets touching my feet and so disrupted my sense of touch barely knew when I was grasping an apple to slice it so held it in a death grip. If you don't want to give up foods you love without knowing for sure if they cause inflammation in your body, find a doctor who will test you to see which foodstuffs your body finds most inflammatory. Here's more about gluten triggering inflammatory response ...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705319/

3. Minimize manganese intake. My diet used to be ultra high in manganese (blueberries, chard, spinach, beets, beet greens, etc..). It was not uncommon for me to have a bowl of blueberries for breakfast or put 2 cups of raw spinach into a smoothie. Unlike most bacteria that require iron, Lyme requires manganese and certain foods are much higher in manganese than others. In retrospect, my symptoms were worst in those seasons when blueberries, beats and leafy greens were available from local farmers. Our immune system has not evolved to deprive bacteria of manganese. I still eat foods high in manganese but don't subsist on them as I used to for certain seasons and today get most of my calories today from animal protein, most of which has zero manganese. Here's information about Lyme using manganese...

www.livescience.com/28120-lyme-disease-manganese.html.

Every 6 weeks

My ideal alternative regime would be like this every 6 weeks (because Lyme reproduces approximately every 6 weeks). Together these alternative therapies cost me far less than the four oral antibiotics I was taking simultaneously, less than half the price of the antibiotics I had. I wish I had known about them sooner-before I trashed my microbiome with 3 years of 4 antibiotics simultaneously. I like to schedule these alternative treatments in close succession because it allows me to schedule the days I'm going to herx - it lets me control when Lyme makes me feel bad rather than Lyme controlling me. My recommendation for every 6 weeks would be the following in this order:

1. FIR Infrared sauna-heats the tissue deeper than regular sauna. Lyme is thought to reproduce faster in cooler bodies better than warm ones. Lyme doesn't like heat and the fir infrared sauna will kill more bacteria than regular sauna alone due to deeper penetration of heat.

2. Colon hydrotherapy AKA colonic - this is amazing for flushing toxins out of deep lymphatic vessels and the Peyer's patches - large clusters of lymph nodes nestled among the intestines. When I get a colonic, I "herx" because the immune cleansing effect is so powerful it frees the lymphatic system to kill off more bacteria. Here's more about Lyme disease hiding out in the lymphatic system...

https://www.ucdavis.edu/news/lyme-disease-bacteria-take-cover-lymph-nodes-study-finds

You can read more about Jarisch-Herxheimer reactions online if you're unfamiliar with the term "herx" - it basically means your symptoms are exacerbated temporarily due to bacteria die off until your body is able to rid itself of toxins.  

3. Manual Lymphatic Drainage massage-I also herx from this. This kind of massage increases lymphatic flow tenfold, rids the body of toxins and results in increased white blood cell production.

Note: Because I have recently had FMT (fecal microbial transplant), I am not doing any colonics right now so that my newly acquired bacteria (thanks to the Taymount Clinic) have a chance to repopulate my large intestine. Had I not had the FMT, I would schedule these three alternative therapies over the course of two days because I have to drive so far for my colonic. If it were possible for me to get them all in one day, I would so that I could further limit the time Lyme has me feeling low in a month. 

While most of my Lyme symptoms were more neurological in nature, I suspect that other Lyme patients will get similarly powerful results with MELT, dietary modifications and these alternative therapies. Sending special healing wishes to all Lyme patients. It's a long road to travel but good stuff happens on that road with perseverance and the right outlook.